Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Tuesday, September 15, 2009

The MDA Telethon is Destructive

Every Labor Day weekend the MDA hosts its annual telethon with Jerry Lewis as its host. Held every year since 1966, the MDA telethon was and remains the most well-known telethon in America. Historically, telethons are extremely successful means to raise money. According to various news organizations, the MDA telethon raised nearly $60 million this year. This is proof positive pity as a means of fundraising worked in the past and still works today. In spite of the telethons effectiveness financially, most organizations abandoned them years ago. The reason telethons no longer exist is simple--their reliance on pity and the exploitation of degrading visual images of children were deemed objectionable. Pity may remain an effective way to raise money but even pity as a ploy to raise money has its limits. In the words of Ms. Crip Chick, "disabled people protest the telethon because of its outdated, negative portrayal of disabilities. These images that the telethon promotes sticks in people’s minds and continually serve as a barrier for disabled people. Disability is not the problem, but rather the attitudes and barriers that society places on us."

The MDA and Jerry Lewis have not gotten this message as they have refused to abandon their annual telethon. In addition the MDA and Jerry Lewis in particular have been obnoxious about their refusal to change and use modern fundraising techniques that are not inherently dehumanizing. Jerry Lewis has also said many derogatory and shockingly nasty things about not only people with disabilities but his critics. Anyone familiar with disability rights and an organization called Jerry Orphans knows the exchanges between Jerry Lewis and his critics have been extremely pointed. What amazes me about these exchanges is how poorly those that protest against the MDA telethon and Jerry Lewis come across in media sound bites. If you doubt me, read what Harriet McBryde Johnson wrote in her wonderful memoir Too Late to Die Young.

With great trepidation I sat down to watch the MDA telethon with my son. We did not watch long as I got increasingly angry with every minute that passed while my son complained about how bad the coverage was. A patina of political correctness cannot gloss over the fact pity remains the heart and soul of all telethons. All the flowery imagery in the world cannot change the premise upon which the MDA telethon is based. Sitting with my son I literally screamed "piss on pity" at the television screen and pondered calling the MDA. Should I tie up a phone line and explain to the operator working for the MDA that the telethon was setting back disability rights and hurting the very people it was trying to help? My son pointed out how useless and frustrating such an endeavor would be and suggested instead that I carefully read and support all the critical news reports that would surely appear following the telethon. I agreed and waited for such reports. I created a google news alert on my computer and was rewarded with a big fat zero--as in no reports of protests that took place. What I did get was news reports on how much money the MDA raised. Yes, $60 million was raised, a remarkable amount given the state of the economy. The MDA slapped itself on the back for a job well done. This only fueled my fury until yesterday. Finally someone wrote a great post about the MDA. Here I refer to Beth Haller at Media dis&dat. For those unfamiliar with Haller's blog, it is a wonderful resource on disability and the news media. Updated daily, Hallar provides an outstanding database of news and information that appear in the media about people with disabilities. I consider her blog must reading.

In Haller's blog entry of September 14, "Have MDA and Parade Magazine Parted Ways?", she provides a few great links to disability community protests and raises a fascinating point: a tradition of the MDA telethon is that Jerry Lewis appears on the cover of Parade magazine to promote the telethon. This year no such image appeared. Haller, referring to a columnist from the Roanoke Times, raises another interesting point. An article about muscular dystrophy research appeared in Parade magazine that plugged the telethon but did not feature Jerry Lewis. In Haller's estimation this is a positive development. She wrote: "I have noticed fewer and fewer local TV stations carrying it, which I personally think is a good thing. Every organization has the right to raise funds, but to me, telethons are a relic of a bygone TV era and many telethon tactics can be very demeaning to people with disabilities. So here's hoping that this Parade MDA cover omission signals an understanding of just how hurtful a pity approach to fundraising can be for people with disabilities." I can only second Haller's hope that the MDA telethon will become a relic of the past. To this end, I sent an email to the editor of Parade magazine praising the absence of Jerry Lewis on its cover and encouraged them to publish an article on why telethons should not be aired on television. I realize such an article will never be written but at least progress is being made. Parade magazine is afterall targeted at mainstream America. Who knows, perhaps the MDA will abandon its telethon and distance itself from Jerry Lewis. While I doubt this will happen while Jerry Lewis still yields great power I think the end of the MDA telethon is inevitable. When it does come to an end, who knows, I may just make a donation to the MDA.

5 comments:

When I was a teenager, we watched the end of it to goof on how gross Jerry Lewis was.

Did you ever read "The Comedian's Children"? I forget the author, but it's a science fiction story about a comedian with a cause (which sounds, hm, like whom?). He would visit the children who were making progress and make them sick again by touching him with his glove.

Becs, I too never understood why Jerry Lewis was so popular. Lewis is undoubtedly the most important figure in the history of telethons and the MDA telethon remains the most well-known. What people do not want to think about is the cost of holding such events. Various estimates suggest 25 to 35 cents of every dollar collected goes to production costs. Then figure in only 65% to 75% of money pledged is ever collected. The result is the figures touted are very different from what actually ends up in the bank account of the MDA. This of course says nothing of the negative portrayal of people with a disability. One more point, I made a stupid mistake. The MDA telethon was first held in New York in 1955.

Harriet McBryde Johnson was my hero. I first became aware of her when she spoke about her first book on CSPAN's BookTV. I think of her everyday and her words. I can't exactly tell you why except I am the parent of a "drooler" as Ms. Johnson has written about, and I came to an important understanding about how my child fits into the world with her help. That sounds sooo sappy, but it's true. Her success and ideas helped me reconcile a lot of issues and even led to an email exchange with Peter Singer that was a very valuable experience for me. I mourned her passing, and I think I should say she's still my hero.

It pleases me to read your post about the telethon and hear another voice in protest. Thank you.

Kepper, Johnson was a brilliant woman and gifted writer. I too think of her often. Aside from he memoir I loved her children's book Accident of Nature. While I was not disabled until the age of 18, I heard many of my disabled peers talk about sleep away camp and how they learned about the culture of disability. As for Singer, I am torn. He is a very smart man and a prolific author. I disagree with much of what he writes and thinks and worry about his influence. Yet, I hesitate to take him to task as he has such a name and defeating a name scholar is almost impossible--especially one who has the backing of a powerful institution like Princeton. I hope the exchange you had with him was satisfactory. I admire your willingness to engage him.

Hello.My name is Robert Ridenour.I have DM1 Myotnoic Dystrophy.The MDA has NEVER helped me except OFFICIALLY diagnose me.Please tell me how I could protest this MDA telethon.The MDA does not help adults with this disease.It is my only goal left in life to make sure everyone knows your alone if you have this disease as an adult.Don't give them any money anymore.Local charities will find a way to help children with this disease.Labor day is always the most depressing part of the year for me.Jerry Lewis has to be replaced before I die from this disease.I'll make sure I'm heard since the MDA ignores my plea's and cries for help.I will leave my email if anyone can help me.I'm in Cali.If I have to,I will go homeless next month to goto Las Vegas and join the other protesters.Please help! ironeagle32118@yahoo.com